Edwin Cameron, Witness to AIDS
Book review by Hon. Justice Michael Kirby
To all appearances, Edwin Cameron is a conventionally successful lawyer. He grew up one of the privileged ‘whites’ in apartheid South Africa. He attended a top high school in Pretoria. From university he was elected a Rhodes Scholar and spent three years at Oxford. He returned to a successful commercial practice at the South African Bar. He was offended by things he saw and left the Bar to teach law at the famous Witwatersrand University in Johannesburg. He also practised public law. Like other leaders of the movement for freedom and equality in his country, he appeared in important court challenges against the regime. He was criticised by the Minister of Justice in 1987 for unprofessional conduct in questioning some judicial decisions. But in those days, that was a badge of honour.
When Nelson Mandela assumed office as President in April 1994, and a new Constitution was introduced, Cameron was quickly recognised. He was nominated to the High Court in December 1994. Later, he came under close consideration for a vacancy in the Constitutional Court. He was passed over on grounds (with which agreed) of assuring a better racial mix in the South African judiciary. Soon he was appointed to the Supreme Court of Appeals (formerly the Appellate Division), the judicial post he still holds. This is the final court for all non-constitutional appeals in South Africa. In the English speaking world it is a famous court. Justice Cameron is a leading member of it. His opinions are widely admired for their technical skill, mixed with a compassion learned from the apartheid experience.
Yet despite these externalities, Edwin Cameron is no conventional judge. This book, a mixture of memoir and action statement, is proof of his sharp intellect, searing honesty, sensitivity and passion for justice. That passion still burns more than a decade since apartheid was interred. Now Cameron has a new concern. It is AIDS. And for him, it is not just a matter of theory. It is a personal reality. Edwin Cameron is a judge living with HIV.
Justice Cameron would not be living today but for his access to the antiretroviral treatment that changed his life and gave him a ‘second chance’. His knowledge that this is so fires him up to be a witness to AIDS for the whole of Africa and, indeed, the world. In this role he is particularly important. As he points out, he is still the only senior public officer holder in his country to be open about his HIV status. Come to think of it, there are few others in Africa or elsewhere who have taken the same step: opening up about themselves. Being an example. This book takes us on his journey to that step. For anyone who wants to know what HIV/AIDS is really like, on a personal level, this book is compulsory reading.
Witness to AIDS does not follow the conventional form of an autobiography. It is like an Ingmar Bergmann film. It has a structure; but it is full of flashbacks and vivid stories as this distinguished judge explains how he learned of his condition and what it meant for him, his life and work.
The first chapter begins with the day in October 1997 when he found that he could no longer climb the stairs from the judges’ common room in the High Court in Johannesburg to his chambers two floors above. He knew that this was a bad sign. In fact, it was a sign that the human immunodeficiency virus (HIV) that he had acquired at Easter in 1985 had progressed to acquired immunodeficiency syndrome (AIDS). He also knew that, in Africa, the mean survival of people manifesting AIDS was between 30 and 36 months. It was a cause for panic.
Fortunately, Cameron had access to the best medical care. He scanned the literature and knew that in the United States, in July 1996, Dr David Ho had reported the remarkable capacity of a combination of three drugs to stop the virus in its tracks, at least in many patients. So the race began for him to get access to the new treatment. It cost him $US600 a month. This was a third of his after-tax earnings as a judge. Most people in South Africa could only dream of such treatment. It was out of their reach, and the government did nothing to make it available.
Edwin Cameron tells the story of the routine cases he was hearing in court at the very time when he was struggling to survive. Poets might write movingly about impending death. But for him, “reality is less poetic … It was fetid, frightening, intrusive, oppressive. Too often I had seen friends and comrades die of AIDS. Had seen how day by day, week by week, they would redefine wellness, adjusting it downwards each time but never losing its goal, no matter how wasted, disabled or physically dysfunctional they became. Getting better always seems to remain attainable, even when, from the outside, it was plain that it no longer was.” Unless he could get the new therapies, this was the journey ahead of Edwin Cameron.
But he did secure the new drugs. And when they came “there was only one word for it. It was glorious. The drugs were working. I could feel that I was getting healthy again. I knew that I would be well again. That, in turn, spurred my inner confidence. Psychological well being had a pronounced psychic effect. If the drugs were working, the virus was no longer multiplying within me.”
There are few better descriptions of what it is like to be living with AIDS and to gain access to the new drugs and to new hope. Andrew Sullivan’s essay “When Plagues End” in his book Love Undetectable (Vintage, 1999) is a rival. But Cameron tells it as it is. His story helps to explain the feelings evident in the chapters that follow.
The second chapter describes the way the author learned of his original diagnosis in 1986 and how HIV gradually took its toll on him:
“AIDS is smell and feel – of sweat and grime, disintegration, excrement, waste. Human waste. AIDS is feeling – painful sharp tingling burning heavy dull weakening wasting enervating … bereaving. AIDS is fear. It is breathless and nameless.”
Cameron describes the way he went about his daily work whilst the horrifying reality was always close. He does not spare himself:
“I was tainted, soiled, polluted. My blood and body were fouled with the most conspicuously vile infection known to recent human history.”
He tells of the funerals he attended and the violence reported in the African media against hapless victims in the townships. Fear was visited on the heads of victims as if removing them from sight would make AIDS go away. The stigma that stubbornly clings to HIV throughout Africa, and the world, are described through the author’s personal experience and the sad cases that he recounts from the lives of people who had no access to the therapies that, at that moment, were keeping him from death.
This leads Cameron to the third chapter addressed to ‘Race, sex and death in Africa’. He gives the statistics of seroconversions throughout the continent, ironically peaking in the newly blessed South Africa with its fine infrastructure and independent courts. Between 4 and 5 million of his fellow citizens were in the same boat as he.
But what was different about South Africa was the grip that ‘dissident’ scientists secured upon the mind of Thabo Mbeki, the brilliant young economist and freedom fighter who succeeded Nelson Mandela to the presidency. For many dissidents, the cause of AIDS was poverty and the environment. Talk of a virus was just an international conspiracy of bureaucrats, pharmaceutical companies and those who would denigrate Africans as ‘sex mad fiends’.
This introduction is a prelude to the fourth chapter on the ‘Tragedy of AIDS Denialism’. Here, Cameron tries to explain the apparent conversion of Mbeki to the views of a small coterie of ‘denialists’ whose message the president was all too glad to hear. At about this time, Cameron was asked to give a lecture at the International Conference on AIDS held in Durban in 2000. The lecture honoured Jonathan Mann, the brilliant first Director of the United Nations response to AIDS. Cameron took the opportunity to express his grief and sense of bitter frustration that, in the new country for which he had fought, the leaders were not facing the reality of AIDS. He felt that he was living proof of the power of the new therapies. But because they depended on the hypothesis of HIV and were expensive, the denial meant that millions were bereft of drugs that could save lives and infuse the living with new quality of life.
So Edwin Cameron reaches his fifth chapter “A Judge is Called to Witness”. He begins this with a description of his attempts to see Mandela and de Klerk in the early days of the new government. Soon the denials took hold of the administration, particularly after President Mbeki was sworn into office.
At about this time, Edwin Cameron gave a lecture to the General Council of the Bar in London. His visit to England coincided with the trial of David Irving’s defamation action based on his holocaust denial. Cameron saw a parallel in the stubborn refusal of intelligent people to face evidence, reality and truth. He said so both in London and in South Africa. It was then that he suffered the second attack by a Minister of Justice in ten years. This time it was the Minister in the new South Africa. He was castigated for speaking out as a judge. Yet he felt a need to do so, drawing on his personal knowledge and experience. It was a very uncomfortable time for him. He outlines the reasons why judges should generally not become involved, beyond court necessities, in matters that put them at public odds with politicians. He holds the view that it should not be done except for “compelling justification”. Yet Cameron knew enough of the silence of the German judges during the Nazi Reich and the French judges during Vichy. People, including no doubt some lawyers, may be critical of his stand. But this book leaves one in no doubt that he agonised about his duty and felt obliged to speak in defence of the voiceless.
Meantime, in South Africa, important decisions had been delivered by the Constitutional Court. One concerned discrimination by the national air carrier on grounds of HIV status immaterial to work capacity. Another, of profound importance, concerned the right of new born babies and their mothers to access nevirapine, one of the antiretrovirals that, for less than a dollar, can radically reduce mother to child transmission of HIV if administered immediately before and following birth.
Eventually, even Mbeki seemed to buckle under the weight of world-wide scientific opinion. Five thousands of the world’s leading scientists criticised the dissidents and told the President that the established link between HIV and AIDS was “clear cut and unambiguous”. In 2004, Mbeki promised “treatment” for South Africans living with HIV/AIDS by 2005. As Cameron points out, the promise was not accompanied by recantation. Nor were “antiretrovirals” mentioned. Full delivery on the promise has still to be attained. For Cameron, this has been a most painful experience amidst the new found freedoms of the country he loves and serves as a judge.
There follow two excellent chapters, written by the author with Nathan Geffen on the technical, but important, questions of access to therapy in a world of patents that prop up the prices of essential drugs. Edwin Cameron asks how can the poor of Africa gain access to the drugs that offered him a glorious and virtually immediate relief from the downward spiral into the vortex of AIDS. Court decisions, international agreements and political action at home are offered as the solution. But for 20 million people living with HIV/AIDS in developing countries, especially Africa, change is happening too slowly and reluctantly to save many lives.
Cameron faces candidly the most acute policy problem now arising in HIV policy. It has a legal element. This is whether, in the context of available therapies, routine testing should be introduced to channel patients with HIV quickly to access to the new drugs. Many are critical of this strategy, fearful that the promise of drugs will be unfulfilled and the stigma of positive status all too real. On the other hand, proponents suggest that once HIV becomes a treatable condition, much of the stigma will disappear. Practical questions such as the assured provision of therapies and monitoring their effectiveness in countries of abject poverty fuel the fears of the cautious.
Edwin Cameron, knowing how the antiretrovirals can restore life, concludes, as I would, that a new strategy is needed. So long as this strategy delivers the lifesaving drugs to millions, a strategy of routine testing with counselling and the right to opt out, seem to be the way to go. Certainly, our world cannot continue to tolerate 3 million AIDS deaths a year. Contrast that figure with the deaths from global terrorism of which so much is written and said. Compare the energy and capital poured into that fight. Then it is realised that it is not just President Mbeki who has failed to give proper leadership to the world in the face of the most grievous human pandemic since the European plague of the fourteenth century.
The last chapter in the book begins with the shocking story of the death of the author’s sister Laura, killed in a cycling accident when she was eleven and he was seven. He recounts the funeral where his father was brought from prison to sit in the back row, a desolate man. This is typical of Edwin Cameron. Truly his is a book of warts and all. Everything is revealed. His parents’ separation. The sadness and isolation of his childhood in an institution for disadvantaged children. The “single and incautious episode” that led to his infection with HIV. The failure of a love affair. The imprisonment of his father. It is as if Edwin Cameron is crying out to Africa: ‘In the name of God, and in the face of AIDS, be honest. It is, after all, just a virus. It is an enemy of the whole human family. We will never overcome it if we are torn by shame, fear and stigma. Science will triumph. But we need to be honest to ourselves and to each other’.
Edwin Cameron’s honesty shines through every page of this book. When he was considered for the Constitutional Court of South Africa, he underwent an interview in a town hall, as is now the procedure for judicial appointment in that country. He disclosed not only his homosexuality (a matter of little import, expressly protected in the Constitution of South Africa). But he also told the selectors of his HIV status. It was a public declaration the like of which had not occurred before or since. He felt that total honesty was required for the judiciary – and for South Africa.
So far, Edwin Cameron’s example has not been copied elsewhere. But it sets the gold standard. It gives his words in this book a special integrity. Perhaps it is the reason why, even after Cameron criticised him at the Durban AIDS conference, Mbeki proceeded to confirm him as a judge of the Court of Appeal. Perhaps it is why Nelson Mandela, new convert to the struggle against HIV/AIDS in Africa, has called Edwin Cameron “one of South Africa’s new heroes.”
This is an unusual book. It will be a long time before another judge writes a personal book on the HIV/AIDS experience. I doubt that I will live to read another such a book. Yet we must hope that, by Edwin Cameron’s experience, candidly told, future books will reveal how new drugs and therapies were developed which helped to conquer this epidemic. And how truth and political courage eventually secured action for the poorest of the poor, who are in the front line of death and suffering from AIDS, especially in the developing world, particularly in Africa.
❧ Edwin Cameron’s Witness to AIDS is published by I.B Tauris & Co. It is available online from Amazon.com or direct from the publisher, www.ibtaurus.com.
This is the unabridged version of a review written by Michael Kirby, Justice of the High Court of Australia, for Positive Living and Interights Bulletin. An abridged version was published in the August-September print edition of Positive Living.
